GrantWatch L ESSAY Opportunities In Mental Health Services Research by Leslie J. Scallet and Gail K. Robinson If health services research is a relatively new discipline, mental health services research is of even more recent vintage. In a brief ten or fifteen years the initial group of mental health services researchers have built on the early foundation of studies in health care and expanded the knowledge base, particularly regarding systems of care and the relationship of public and private services. Health care reform comes at an opportune time, as the debate demonstrates daily the need for systematic knowledge to answer immediate questions and to develop, support, or oppose the myriad proposals and permutations under consideration. Whatever the outcome of the reform process, it is abundantly clear that services research is an essential element of the health care infrastructure. Mental health now constitutes one of the most promising areas of opportunity in health services research. The availability of credible mental health information—unexpected by many policymakers—in the health care reform debate has enhanced the stature of the research and its practitioners. The reform debate itself has highlighted both the common and the specialized mental health issues within the health care framework. The public sector remains the predominant source of funds for mental health services research, primarily via the National Institute of Mental Health (NIMH) and other federal agencies. On the private side, a review of annual reports of various private foundations with significant health services research interests reveals none with a specific focus on mental health. However, most of these foundations have funded several projects involving mental health in conjunction with their major areas of focus, such as substance abuse, homelessness, elderly, children, education, and primary health care. These include The Robert Wood Johnson Foundation, The Pew Charitable Trusts, The Commonwealth Fund, The Henry J. Kaiser Leslie Scallet is executive director of the Mental Health Policy Resource Center in Washington. Gail Robinson is associate director for research and analysis at the center. Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. GRANTWATCH 241 Family Foundation, W.K. Kellogg Foundation, Milbank Memorial Fund, and The William T. Grant Foundation, The John D. and Catherine T. MacArthur Foundation health program, which does not accept unsolicited proposals, supports two endeavors to conduct and/or publish significant mental health services research: the Mental Health Policy Resource Center and Health Affairs. In addition, MacArthur's Law and Mental Health Research Network focuses on many issues germane to mental health services research. This essay examines the development of mental health services research and the opportunities for future research that merit the attention of both public- and private-sector funders and researchers. What Is Mental Health Services Research? Unlike other areas of health, mental health has long looked to a single federal agency—NIMH—as the major source of national funding for all types of research, services, training, and statistics. Perhaps for that reason, NIMH has defined the services research arena somewhat more broadly than does the Association for Health Services Research (AHSR), which defines services research as "a field of inquiry that examines the impact of the organization, financing and management of health care services on the delivery, quality, cost, access to and outcomes of such services." For NIMH, the boundaries among clinical, epidemiological, treatment, and services research are not always clear. For instance, considerable attention has been devoted to distinguishing between clinical services research and service systems research, both of which have been treated as part of mental health services research. Mental health services research began in the late 1970s and early 1980s; it grew out of NIMH's epidemiology and data collection programs and emphasized statistical information and economics. The priority of the institute during this time was the public mental health system and the primary public patient population—persons with serious and persistent mental illness—and this priority was reflected in the services research program. In its 1991 report, Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services, a chapter entitled "Clinical Services Research: Enhancing the Real-World Applications of Clinical Science" articulates the boundary with other types of research: Clinical services research begins where clinical research itself leaves off. It is concerned with the application of clinical knowledge gained in a controlled research environment, to the larger, relatively uncontrolled environment in which the mentally ill actually function. Its goal is to improve the quality of care of everyday clinical practices so that they consistently meet existing state-of-the-art criteria. Major areas of concern for this research include salient characteristics of Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. 242 HEALTH AFFAIRS | Fall 1993 mental illness, such as demographics, risk factors, cultural influences, and family issues; assessment in terms of specific diagnoses as well as physical, social, and vocational functioning; specific treatment and rehabilitation interventions; and outcomes and effectiveness of services. The next chapter of NIMH's 1991 report, "Service Systems Research: Improving the Organization and Financing of Care," describes service systems research as focusing on how to provide services most efficiently, economically, and equitably. It encompasses a broad and eclectic set of questions and issues: identifying the nature and scope of local needs; matching local services to needs; structuring integrated care that reaches the consumer; allocating financial resources so that consumers and providers have proper protection and incentives to use services appropriately; legal issues such as the role of the criminal justice system, civil commitment, patient rights, and confidentiality; human resource issues; and stigma and strategies for changing attitudes. T h e Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA) Reorganization Act of 1992 (P.L. 102-321) split the services and research programs of NIMH, the National Institute on Drug Abuse (NIDA), and the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and transferred the three as research-only institutes to the National Institutes of Health (NIH). Services research went with the research portfolios, protected by a mandatory set-aside—12 percent of research funds in fiscal year 1993 and 15 percent in fiscal years 1994 and 1995 must be spent on services research. The new Substance Abuse and Mental Health Services Administration (SAMHSA)—including its new mental health component, the Center for Mental Health Services (CMHS)—was given evaluation authority but no specific funding in the form of a line item to support evaluation studies. The A D A M H A Reorganization Act defined health services research as "study of the impact of the organization, financing, and management of health services on the quality, cost, access to, and outcomes of care." This definition is essentially the same as that used by AHSR. Mental health services research may be defined most simply as a subset of this domain. Given the mandated set-aside, it has become particularly important to distinguish between mental health services research and other forms of research. A recent work group convened by the Foundation for Health Services Research (FHSR) suggested two key distinguishing factors: (1) the intent of the study and nature of the hypotheses, and (2) the distinction between studies of factors influencing the effectiveness of health services in "real-world settings" (health services research) and studies concerning the efficacy of specific preventive, diagnostic, or treatment services done under highly controlled conditions (not health services research). 2 One NIMH Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. GRANTWATCH 243 services research official recently offered the following general definition: Services research differs from treatment research, which examines clinical treatments under highly controlled experimental conditions, by including factors such as costs, reimbursement mechanisms, treatment ideologies, and personal and organizational interests that affect how providers actually deliver services. For this essay we reviewed recent and active projects in mental health services research and consulted with selected knowledgeable persons; this provides a descriptive snapshot of the kind of work currently funded and under way. This base, together with the newer areas of priority resulting from the health care reform process, suggests many promising opportunities for the future. Current Work For an overview of recent grants identified as mental health projects, we turned to the Health Services Research Grants Information System, a database of ongoing and recently completed health services research projects that is being developed by FHSR and the Cecil G. Sheps Center for Health Services Research of the University of North Carolina at Chapel Hill. This database, whose creation was funded by The Pew Charitable Trusts, will allow researchers as well as policymakers to keep abreast of current research, rather than waiting until the results are published. The Health Services Research Grants Information System will become a part of the National Library of Medicine's MEDLARS system. The information system is scheduled for completion in late 1993. Information in the database will include the name and address of the performing organization and principal investigator, amount of the award, an abstract of the project, and a description of the population studied. Initial funding agencies include the Agency for Health Care Policy and Research (AHCPR), the Health Care Financing Administration (HCFA), NIH, the Health Resources and Services Administration (HRSA), the Department of Veterans Affairs (VA), and seven private foundations (The Pew Charitable Trusts, The Robert Wood Johnson Foundation, The John A. Hartford Foundation, W.K. Kellogg Foundation, The Henry J. Kaiser Family Foundation, The Commonwealth Fund, and The William T. Grant Foundation). Additional federal agencies and private foundations will join the effort in the future. Our database search turned up nearly 200 grants (of a total of 1,500 listed) that focused on mental health issues. All but a handful were funded by NIMH and other federal agencies. Of these, roughly one-third could be generally categorized as targeting services for persons with the most serious mental illnesses. The remaining two-thirds covered a wide spectrum of topics, including mental health issues related to aging, women, family Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. 244 HEALTH AFFAIRS | Fall 1993 violence, adoption, various minority groups, alcohol and/or drug abuse (which generally coincide with mental health problems), general health care, homelessness, and many more. NIMH is by far the largest funder of projects identified specifically as mental health services research. The NIMH Services Research Branch oversees a broad program of investigator-initiated grants addressing virtually any area related to mental health services. Funding in fiscal year 1987 was $18 million. The current set-aside (12 percent of the total NIMH research budget) translates into roughly $50 million for fiscal year 1993. More than 250 active grants (listed with NIMH as of January 1993) are concentrated in the following areas in descending order: severely mentally ill adults; mental health economics; children and adolescents; rural mental health; adult primary health care; and multiple diagnoses of alcohol, drug abuse, and mental (ADM) disorders. Significant numbers focus on mental health service systems, minority mental health, homeless mentally ill, and research scientist awards, and some are devoted to disability and rehabilitation, human immunodeficiency virus (HIV) infection, self-help services, research methods, and state research capacity building. NIMH has established a program to develop and maintain Centers for Research in particular areas of priority: severely mentally ill adults, children and adolescents, minority mental health, rural mental health, and self-help. Exhibit 1 lists specific grant announcements that detail areas of focus and priority. In addition to NIMH, a variety of federal agencies have services research programs that include mental health issues as a component, although not as a priority. Agencies that are funding projects included in the FHSR database are the Department of Veterans Affairs, the National Institute on Aging (NIA), NIDA, NIAAA, HCFA, the Office of Rural Health Policy, the National Center for Nursing Research, and AHCPR. Future Opportunities The heightened health care reform debate has accelerated the development of agendas in mental health services research and is likely to provide a framework for setting priorities for the next several years, both in foundations and in the various federal agencies. Even at this early date it is possible to discern several significant themes. These can provide some guidance for the development of mental health services research ideas and extended programs during the next several years. Reform-related issues with a significant mental health dimension. The issue of risk adjustment in health insurance has particular relevance to mental health. Risk adjustment has to do with the probability that any Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. GRANTWATCH 245 Exhibit 1 Mental Health Services Research Announcements Issued By The National Institute Of Mental Health (NIMH), Selected Projects, 1 9 9 0 - 1 9 9 3 Implementation of Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services (April 1992) Centers for Research on Services for People with Severe Mental Disorders (June 1992) Implementation of The National Plan for Research on Child and Adolescent Mental Disorders (April 1991) Centers for Research on Mental Health Services for Children and Adolescents (November 1991 ) Research on Hospitalization of Adolescents for Mental Disorders (April 1991) Research on Emergency Mental Health Services for Children and Adolescents (April 1993) Research on Reimbursement Issues in Mental Health Services Delivery (Revised announcement issued June 1989; to be reissued soon as the new mental health economics research announcement) Research on Managed Mental Health Care (June 1991) Research on Integrating Mental Health and Related Services for Persons with Severe Mental Disorders (May 1993) Research on Mental Health Services in the General Health Care Sector (September 1992) Research on Disabilities and Rehabilitation Services for Persons with Severe Mental Disorders (July 1991) Mental Health Research on Homeless Persons (Revised May 1991) Research on Services for Persons with Mental Disorders that Co-occur with Alcohol and/or Drug Abuse Disorders (Revised March 1990) Research on Mental Disorders in Rural Populations (Revised April 1991) American Indian, Alaska Native, and Native Hawaiian Mental Health Research (February 1993) Minority Mental Health Research Centers (September 1992) Research on Severely Mentally Ill Persons at Risk of or with HIV Infections (September 1988) Research on Effectiveness and Outcomes of Mental Health Services (March 1990) Research Infrastructure Support Program (RISP) (September 1992) Note: To obtain a copy of any of the announcements listed, or to obtain information about upcoming research conferences, contact the Services Research Branch, National Institute of Mental Health, 5600 Fishers Lane, Room 10C-06, Rockville, Maryland 20857, (301)443-3364. given health plan may become responsible for a larger number of persons with more serious health problems than other competing health plansHealth plans that fear this situation could develop procedures that discriminate against persons with known high-cost illnesses; the more severe mental illnesses, as well as acquired immunodeficiency syndrome (AIDS), cancer, and others, lead the list of illnesses that insurers wish to avoid. A concern will be how to protect health plans with disproportionate numbers of high-risk enrollees and how to protect high-risk persons from creative forms of exclusion. A second issue relates to functional disability. Current measures of illness, such as diagnosis, often are not good predictors of service needs and outcomes. The problem of measuring illness is now a policy issue for long-term care in determining eligibility and assessing needs. This same issue will become a problem for acute care, as the need arises to sort out persons with significant service needs from those with less serious condi- Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. 246 HEALTH AFFAIRS | Fall 1993 tions, be they physical or mental Third, in a health care system that relies heavily on managed care, the development of appropriate standards for such management becomes essential Practice variations are widespread, and good managed care systems are difficult to define and measure. No recognized standards now exist either for "carved-out" programs to manage mental health care or for addressing mental health issues within an overall managed care program. Furthermore, once managed care is in place, how will its performance be monitored? What are reasonable measures of undertreatment? These issues are likely to be important for various vulnerable populations, including the mentally ill Fourth, the definition of outcomes, as well as the design of outcome measures, is a major preoccupation of the health care reform process. The new emphasis on quality-of-life measures necessarily involves mental health considerations. And the emphasis in medical outcomes on effectiveness (what works in real-world conditions) as opposed to efficacy (what has a statistically significant impact in ideal research conditions) also involves psychological and psychosocial factors. Fifth, the interaction between physical and mental health is likely to attract increasing attention in a managed care environment. The mutual impact of physical and mental factors on health and care-seeking behavior is better recognized than it is understood. As mental health care is more explicitly integrated into general health care settings, this interrelationship will continue to stimulate research interest. Sixth, a reformed health care system is likely to include a major role for states. Historically, states have played a more comprehensive role in mental health than in any other area of health, and much can be learned from that experience. The new configuration will provide a natural laboratory for explaining and exploring different states' approaches to their new role in both physical and mental health. Finally, the incorporation of Medicaid (in whole, in part, or not at all) into a reformed health care system will create numerous opportunities for assessing different configurations of services that are included or excluded and their impact on various elements of the Medicaid population (particularly indigent persons with severe mental illness and welfare mothers and children). Intersection of mental health concerns with population groups or issues. Different segments of the population have unique needs that demand research attention. The necessity of integrating health and mental health services for children with a host of other types of services (education, income support, social welfare, juvenile justice, and so forth) has been a continuing theme of the health care reform debate. Similarly, in the coming debate over welfare reform, what should be the interface between Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. GRANTWATCH 247 mental health and child welfare? The mental health services research sector has been a leader in developing model approaches for integrated systems of care for children. The elderly also pose unique challenges to services research. The recognition and treatment of mental disorders in elderly persons is a major issue for both the primary care and long-term care elements of the health care system. The impact of mental health conditions on the ability of aging persons to live independently and to manage their own health care has gained much attention. Finally, different patterns for various population groups in the use of general health versus mental health services raise many concerns. The interplay between minority cultural norms and majority community attitudes is of particular interest. In addition to population-linked concerns, specific issues have a major mental health facet. Both alcohol and drug abuse disorders frequently overlap with mental disorders. The service systems are sometimes integrated but more often operate separately from each other. Agencies concerned with ADM problems recognize the need for collaboration and exchange on issues of etiology and comorbidity. Mental health and behavioral issues are also important in AIDS prevention and treatment. In fact, persons with severe mental illnesses have been found to be at especially high risk for contracting AIDS. Finally, the emergence of violence as a public health issue has led to heightened interest in researching possible relationships between violence and mental health. Is there a link between mental disorder and violent behavior, and, if so, what are its parameters? Also, what are the health care and mental health care consequences of experiencing or witnessing violence? Integration of health and mental health data systems. A reformed health care system will require extensive collection of uniform data. Historically, health and mental health information systems have been separate. In efforts to redesign existing national data sets, as well as to plan for new data collection systems, the issue of the separation or integration of mental health information must be addressed. Episodes of care are likely to be a significant form of measurement in a reformed health system. Appropriate and consistent definitions for both health and mental health care will need to be developed. Potential Sources Of Funding Foundations are identifying issues ranging from how various elements of the new system will operate, to financing strategies for services that are not fully covered in the new system, to the impact of reform on individuals and families. In general, as foundations announce their primary health care interests or priorities, they can consider developing the mental health Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. 248 HEALTH AFFAIRS | Fall 1993 dimension as an example or element of the foundation's particular areas of focus. By far, the most significant funder of mental health services research remains the federal government. Numerous agencies of the Department of Health and Human Services (HHS) are discussing health care reform implementation issues (many of which include mental health); however, until legislation is passed, clear lines of responsibility cannot be established. The broad agenda described above likely will fit within the research programs of NIMH, NIAAA, and NIDA via the 12 percent set-aside for services research in fiscal year 1993 and 15 percent in fiscal years 1994 and 1995. The office of the HHS Assistant Secretary for Planning and Evaluation (ASPE)/Health may fund some research into risk adjustment, managed care, and functional disability. Under SAMHSA, the Center for Mental Health Services is likely to concentrate on system evaluation, integrated services for children and adults with severe mental illness, homelessness, prevention services (if funds are appropriated), and Medicaid. The SAMHSA Center for Substance Abuse Prevention and Center for Substance Abuse Treatment likely will fund research into comorbidities. The AHCPR, in accordance with its mandate, likely will produce mental health practice guidelines, and HRSA likely will focus on primary care, indigent populations, and rural health care. Probably the most significant change in NIMH's services research agenda is the broadening of its focus to include more issues beyond those involving persons with severe mental illness. The implementation of national and state health care reforms will have a dramatic effect on both public and private service providers and on access to and use of mental health services by the general population (including low-income persons). The severely mentally ill population remains a high priority, and NIMH remains committed to its National Plan of Research to Improve Services. However, the infusion of new money from the set-aside and the demand for information on additional reform-related matters have combined to stimulate a broader agenda. NIMH is now developing a new grant announcement on issues relating to health care reform; this announcement is expected in fall 1993. It is likely to encourage research on risk adjustment and to emphasize the impact of health care reform on the states. Comparisons of different states' approaches to financing and covering mental health services—from publicly managed, capitated forms of financing catastrophic and long-term mental health care to buying into private managed care systems—may be highlighted. Development and assessment of monitoring capabilities and methods of assuring quality of care also are likely to be emphasized. NIMH also will reissue its mental health and economics announcement. Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. GRANTWATCH 249 This research area targets the role of economic factors in mental health services delivery, providing a near-term opportunity to develop essential baseline information before enactment and implementation of health care reform. Later, this research funding should provide an opportunity to assess the reform system in relation to mental health and to develop recommendations for change. Specific areas of interest include assessment of factors affecting supply and demand; financing of publicly supported mental health services; financing of alternative delivery systems, managed care, long-term care, and catastrophic care; the impact of reimbursement methodologies and insurance benefit design; social and economic costs of mental disorders; cost-effectiveness of services; the impact of reimbursement policies on quality of care; the impact of legislation and regulations on reimbursement; financing and reimbursement policies affecting the market for services of providers in various settings; financing of services for particular population groups (for example, minorities, children, and the elderly); and the impact of state rate-setting methods and systems on services. NIMH also will continue to give priority to its National Plan for Research on Child and Adolescent Mental Disorders (1990), including services research issues.4 During 1994 research is expected to focus on obtaining baseline data on who is providing what services to children and adolescents. Research probably will encompass delivery of mental health services to children and adolescents in general health care, specialty mental health, and other settings; coordination and integration of mental health services with other services such as criminal justice, education, and welfare; service needs and delivery of services to subpopulations of youths with comorbidities of various types; and evaluation of innovative service models. Concluding Comments In conducting this brief review, we were struck by the perception on the part of funding agencies and others that the limited number of mental health services researchers hampers the progress of a field that is ripe for expansion. There is a clear and explicit interest in developing new talent and attracting experienced researchers from a variety of other disciplines and areas. Mental health will be a particularly interesting area of change and challenge in health care reform. Among the salient issues will be tensions among national, state, and private-sector roles in providing and financing mental health services; the likelihood of early coverage limitations designed to be expanded later; and how to assure nonmedical wraparound services for vulnerable groups such as children and adults with severe mental illness. Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org. 250 HEALTH AFFAIRS | Fall 1993 Underlying these questions is the larger issue of integrating mental and physical health services. Which services are health, which are mental health, and which are "something else?" Will (or should) there continue to be a separate mental health system? If so, for whom? Is mental health services research separate from health services research? Mental health services research began in an era in which mental health services and policy were defined largely in terms of mental illness—indeed, in terms of the most severe mental illnesses. As the health care reform debate continues, attention increasingly is drawn to the broader issues of mental health care for the general population. The challenge for mental health services research will be to address both the traditional and the expanded agendas within a changing health care system. This may suggest expanding the field of mental health services research to encompass both the discrete specialty researcher and a wider group of health services researchers who address mental health factors as a matter of course in examining health issues. NOTES 1. National Institute of Mental Health, Caring for People with Severe Mental Disorders: A National Plan of Research to Improve Services, DHHS Pub. no. (ADM)91-1762 (Washington: U.S. Government Printing Office, 1991). 2. Foundation for Health Services Research, Report: Health Services Research Workgroup (Draft Summary of 26 April 1993 meeting, 14 July 1993). 3. C. Windle, "NIMH-Supported Studies of the Mental Health Service System," Administration and Policy in Mental Health 20, no. 5 (1993): 393-397. 4. National Institute of Mental Health, National Plan for Research on Child and Adolescent Mental Disorders, DHHS Pub. no. (ADM)904683 (Washington: U.S. GPO, 1990). Downloaded from HealthAffairs.org on September 12, 2021. Copyright Project HOPE—The People-to-People Health Foundation, Inc. For personal use only. All rights reserved. Reuse permissions at HealthAffairs.org.